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justine1

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Everything posted by justine1

  1. Hi I have experience of this myself. Sam had four fixed term exclusions during his statementing process and it really did help him in the end. I also have to say that if ANY child lashes out at another they should be excluded,always put yourself in the position of the parent whose child has been hit even if it was a provoked "attack" Not sure if your son is statemented but whether he is or is'nt the EP could be trying to prove the environment is not appropriate prehaps the school is not coping. Make sure everything is done legally. You should get a letter about the exclusion detailing the incident that took place,they dont name names but use the childs initial instead. The letter needs to also state the time/date when the exclusion begins and the time/date when it ends. When returning to school you and your son should meet with the head/senco before your son starts his first lesson. You need to also make sure his absense from school is recorded as authorised you can request to see the register yourself. As I say it helped my son and he has been happy at an ASD unit for three years now and has absolutley no aggressive outbursts.
  2. Thanks for the reply. Yes my brother is disabled and also could no longer walk the 1.4miles to his son's school, his catchment school(0.1mile!) was supposedly fil. They also sent him to appeal but the stress of it all got to him and he did not appeal three months later they offered him a place anyway. So I am hoping for the same. My only concern is not too much the appeal but more the fact that I cannot get him to school right now and wondered where I stand on this issue. As I say if my partner could drive this would not be an issue but we can't. The only other option would be to use the bus but as I say he will be late everyday and have to finish early to,thus he would actually only be getting about 4 hours of education(if you take off lunch/play time) I obviously do not want to be fined for not taking him to school but what option do I have. I was also under the assumption that although the lengthened the school day for under 5's in 2009 the law still remains that a child does not legally have to attend school until the term following their 5th birthday which will be september,so instead of appealing for a reception class place I would be asking for a year 1 class,which is exactly the situation my brother was in. Forgot to add that my four boys currently go to four different schools and Eli is not the youngest. My daughter will be going to school in three years time and she is more likely to be accepted to the school I currently want for Eli,so in that case I will have five children and five different schools??? I do like his current school and if they could provide transport that would be great but it still makes things very complicated.
  3. Hi Wasnt sure whether to put this under here or further down the page as its not really ASD related..not directly anyway. So my 4 year old Eli has attended school full time since september. We used to live just a 15minute walk from his school however we recently moved and we are 2.6miles from his school. Originally I decided to continue sending him to his school,dropping him at the childminder before work(7am) and fetching him after(4pm) however I do not get much help financially and its costing me £60p/week to send him to school. I decided to apply to a nearby school (0.5 miles) it is a Cof E school and we have started attending church(prior to applying) the boys have always attended church with their father anyway, however he is a jealous selfish man so won't get his priest to sign the supplementry form. Luckily the school is not voluntary aided so we do not really need the supplementry form. We were rejected the school place two weeks after applying as they state the class has already got 30 children. I am now going to appeal. here are my arguments,which I have given evidence for: 1. I work part time and I am a fulltime student nurse(I do 37.5 hours a week uni or placement) I start as early as 7am and get home around 4.30..sometimes later. My partner is at home full time however he has to be at home for Sam and Dan taxi's..which come at 8.15am and arrive at 3.20pm after school. Neither of us drive. 2. The bus that does go to the school gets to the school 9.10am (which my partner would not make anyway if either of the other taxis dont arrive on time...happens at least twice a week) and then after school there is one at 2.30pm or 3.30pm( that means my partner will be too late for the other two boys) The bus station is also 0.9miles from our home...further than the school I have applied for. He also has our baby daughter with him and the bus is not flat,has stairs. 3.We are on a low income so cannot afford to pay for a taxi for him. In fact I already pay for Dan's taxi as he has no statement just diagnosis and he has always done well where he is. So I am wondering what to do now. I informed his current school that I could no longer bring him,after half term. They are insisting that he should be in a school,despite the fact I said I am going through appeal and that it is really not a viable option to send him there. They did enquire about transport but apparently he is not eligible until after his 5th birthday(he turns 5 in July.) What are my rights and where should I turn? The government build these houses not thinking about where children will go to school and they want people to work which I do but do nothing to help, very frustrated! Any advice will be appreciated.
  4. The ed psych saw my son twice,once I was not there it was just to see what the school could do, it was prior to his dx though going through the process. The second was during statementing this was a much longer visit, she spoke to me in the morning,she was not to interested in a full history,remember this is education not diagnosing(medical.) So she asked thing like what I want for my son, how I feel his education is going(if his needs are met from the education point of view) and how I think a statement will ultimatley help him. She then observed him during 2 or 3 different lessons,to see transitions between each etc. Finally she met with him 1:1 to do various games/puzzles etc. So don't worry to much if she has not met with you yet,so long as its not statementing you are going through.
  5. My 9 year old lies when he is unhappy about something or when someone has annoyed him. In the past he has lied about teachers hitting him(started that when he was 3 at pre-school!) Sometimes I think its so that he does'nt have to go into school. He does'nt do that anymore as he is quite happy at his current school. Also he lies about food he has eaten. My 7 year old who also has ASD does not lie at all,not even little white lies.
  6. Hi I work in a hospital and whilst I completely understand where you are coming from(I have two sons with ASD) it is very unrealistic to meet every single person/patients needs. I do believe most staff do try and make reasonable adjustments for patients where possible. Looking at the issues you have I personally cannot see what they could have done differently. The issue of overcrowded waiting room: Possibly could have put you in a private room but this is costly and some hospitals don't even have the facility to do this. The other option could be that you were asked to come in at a time closer to your op time,however again how would you know for sure when this will be? Surgeons are also consultants,they have op lists to stick to but also have to do ward rounds and cover for emergencies. If you went in at 2pm and your op was scheduled for 4pm who is to say an emergency would not come up and cause delays. With the accents,again I understand. My son Sam had difficulties when being assessed as his assessor had an accent that he struggled with. There are many English dialicts which we as NT people even struggle to understand but this cannot warrant requesting certain staff. My brother has Aphasia as well so for most appointments he takes his wife with him, prehaps next time you can take someone who knows how to best communicate with you. There are communication boards you can get online to take with to hospital or even create a communication book to take with for staff to read. It used to be ok for females to request female staff to care for them but now this is not always possible with the changes over the years there is almost an equal amount of female nurses as there are male. Likewise most consultants/surgeons are from abroad as there are not enough english people to fill the posts. Again with your sensitivity to touch you could include it in a book or even make yourself an ID type bracelet stating your sensitivity. It is a natural reaction for caring staff to comfort patients and this generally does include touch, just because your file states you have AS does not mean they are to know this. Despite the fact I have two sons with ASD if a patient comes through the door where I work I will not know how to treat the patient as they are an individual. Always call the ward or department you are going to prior to going or email them with details of your diagnosis and how it affects you. Don't look at what the hospital could have done differently but what you could do next time. ASD is just one of many,many disabilities so as I say it would be very hard to meet everyones needs and to understand each individuals preferences, especially if it is just for a day procedure. Prehaps if you were on a ward your experience would have been different as they had a longer time to get to know you.
  7. I dont normally agree with diet changes however changes in mood or behaviour are often linked to diet. So it is worth suggesting it is a gradual process thou,as I am sure Trekster will agree,you cannot cut everything out overnight. Also I know it may be embarrassing but it could be constipation the feelings you describe are common in people who have constipation.
  8. justine1

    MRI

    Hi MRI is very expensive and with anything medical it has to be proven to be beneficial to a patient. As it was never proven he did indeed suffer fits its unlikely to be reason enough for them to do an MRI coupled with the fact he has overcome many difficulties he previously had. The will therefore try diagnose without medical interventions, and prehaps consider MRI if the delays become worse or if the fits begin again.
  9. I can understand how these comments can hurt however as you say the person does'nt know your sexuality so most likely was'nt deliberatley offending you. Another point is that everyone is entitled to their opinion no matter how wrong you think it is. Mu boys are mixed race and have often had to endure negative comments and even hatred because of it. I cannot change every racist persons view but I can teach my kids not to be racist and how to accept other peoples views.
  10. Hi Does your son have a visual routine "now and next chart" ? This way he knows when he has computer/game time,other play time etc. If you do a timetable for weekdays from when he gets up for school until bedtime, another for weekend and for school holidays. If he does'nt already know how to tell the time teach him so he knows when to do what,use digital if need be. Give him warnings before his time is up so 1 hour computer time when there is 10min left let him know,possibly use a timer as well. I know it may be hard but he needs to learn what is and is'nt acceptable, you say he "hogs" the remote...hide it don't let him hog the remote he is 9 years old! You say you give positive praise for goood behaviour but what about the bad? He needs to lose time from what he likes,so again this links with his visual timetable if he gets an hour a day on computer you remove 10-15min off that time for every negative behaviour. We do this by means of a "good strip" thumbs up for good thumbs down for bad..again something visual so you not just telling him he is losing time he can see it for himself. Of course implementing these rules will make him angry but is it not better for him to be angry short term rather than him growing up into an adult who thinks he can get away with hurting others. You can also use computer time as an incentive for getting outside to the park or just doing something else even if its just 30min a day. As someone else mentioned I would look into what games he is playing,are they violent and what is the age restriction. My eldest(NT) son is 12.5 years old and he is not an aggressive person so I dont mind him playing certain games however he is not to play when his younger brothers are around as I don't think its appropriate. My 9yr old and 7 yr old tend to stick to minecraft(creating type game) and sonic the hedgehog.
  11. My situation was that I had no idea about ASD at all when Sam got his dx age 6. When he got his dx and I read about ASD I could actually tick more boxes for Dan,aged 3.5 at the time,than for Sam! However,there were so many problems I was having with Dan at the time so I had already started seeking help for his eating and sleeping problems before being referred for ASD assessment. The other thing was as well as the fact he had a brother dx'd with ASD and that he is male, he was also born almost four weeks premature,so the HV were already suggesting he may have some development delay. The same has to be said for Eli,now 4. He had complications at birth and again I was told when he was 2 weeks he may have delays coupled with two brothers being on the spectrum! I have not had as many difficulties with him as what I have been through with Sam and Dan...however a BIG part of me think prehaps this is because I have got so used to knowing how to avoid meltdowns and know what he likes etc that I have adapted to him from day one. He has okay speech,I would just say average,though he did take awhile not as long as Dan,at present his school have said he is very quiet as have other childminders and nursery in the past. They have also said he is slightly behind academically. He too has had issues with sleeping,only started sleeping though a coupld months ago and toiliting problems..still has with urine "accidents." I personally think maybe you should address the main issue which from your post I am guessing its the speech. If however there are many things then go straight for ASD assessment. I am glad I went about it the way I did with Dan ie. dietician first,then play therapist etc, because when I eventually went for his ASD assessment they could see all avenues had been explored and all the other people he had said had written to the paed to say they believed he had development and behaviour issues. You say about how hard work Jack is but if your other son is not as hard maybe there is not as much going on with him so he may not get a dx. Just that with Sam and Dan both of them wore me out so I knew both had something not quite right. Even with my eldest son I see some ASD traits but he is 12 years old and copes well, overall I don't believe he does have ASD. It can become blurred when you suspect one has ASD reading up on it all its bound to make you see some similarities in more than one of your children. What does your partner or others who know both boys think? I asked my brother and mother for their opinions as not only do they know my kids they have also both worked with kids,some of whom have had various special needs. Likewise with Eli,my current partner(not his father) has been around since he was age two and has commented on his odd behaviour and has also said prehaps I can't always see it because either I am in denial or its just behaviours I am used to having been living with it for 8 years now. I would have taken him for a dx age two as his then HV said it may be worthwhile but I made a decision to wait until he started school now I have his teachers to back me up so feel its going to be less challenging to look into assessment now. Just worth considering everything before thinking ASD straight away.
  12. This is very interesting.(sorry smiley for going off your original topic!) I have for a long time thought my 4 year old Eli may have ASD like his two older brothers,but something just does'nt fit. However about a month ago I started looking into Dyspraxia,mainly due to his clumsiness...which my other three boys do not have to that extent. He constantly walks into door frames/people/objects and trips over things that dont appear to be there. His teacher says he has great difficulty holding a pencil,but I would say he is likely to be able to read(though a little young) as he can recognise and sound all the alphabet and some basic words. What baffled me was that since he was a baby he definatley has some sensitivity to food textures and sound, he is okay with touch and smell. He always licks things and then says what colour it tastes like as opposed to what it looks like,he does this with cars in the street which is very embarrassing. Generally loves to lick many objects,seems to make him happy. He also had speech delay and still remains quiet when outside of home,at home he is very chatty and loud..teachers cant believe it! So I didnt see where this fits in with Dyspraxia,but now I see where it overlaps. I think he may have dyspraxia and possibly sensory integration disorder,still maybe it is ASD but having two with ASD I really dont think he does have ASD. We are waiting for him to be seen by the child development nurse at school and take it from there,the school have said he is starting to show some delays but I dont want to rush things.
  13. I was obsessed with the Archie comics as a kid my fav character was Jughead. Sam would only read spongebob comics until a year ago when he begun to read the Diary of a Wimpy kid books. The school he was at thought he couldnt read for 6mths until I explained he only reads comics.
  14. justine1

    Bedroom Tax

    This is very worrying and stressful. There are seven of us living in a two bed house,I have been on the register for just over three years for a larger house and finally have been offered a new four bed home. At the time of the offer(three months ago) I was on housing benefit they were quick to inform me that actually as of April I am only entitled to a three bed...apparently: 1 room for me,my partner and my daughter as she is under 5 1 room for my eldest and one of my sons with ASD 1 room for my youngest and other son with ASD and that if I wanted the extra room I would have to pay 25% of the rent,despite the fact I applied for four beds due to medical grounds...apparently this will be scraped(?) Luckily I am back on my course and working part time so I can pay rent(though we struggle financially.) However even with a four bed I will still have three boys in one room in 5 years time because my youngest son will be 10 when my daughter is 5 and therefore opposite sex cannot share. The regualtions and laws never quite match up! The other issue is my partner has two kids that will come over occassionally,luckily this will be when my boys' go to their dad for weekend as again this is not taken into consideration. I feel for those non-resident parents that will be forced to either downsize; this making things cramped or pay extra; making things difficult financially. Also those who need live-in carers.
  15. justine1

    Moving ahead

    Hi Dekra Wow that is wonderful news that your son is doing so well and the friendship for both of you is so fantastic. I am currently looking at secondary schools for Sam,he is in year 5, I need to decide by April for his annual review and its proving very difficult. The advice I was given by his ASD unit is....Yes he is making/made such great progress,but that is because he is the right environment. If he gets placed in the wrong environment all the old problems will just re-surface. The ASD is still there and he has real difficulties but the school know him well enough to guide him in the right dirction. Despite the fact he has a statement it is possible with all the cuts the LEA could say he should go to mainstream,he is currently only 25-30% integrated can't see it changing that much in the next year. We have three mainstreams that are in our catchment,so the school suggested that even though we know he can never cope at these schools I need to go there and look at the schools. When I go I need to ask many questions such as how many kids they have on roll with ASD, what support they have(including extras,like at the moment he gets SALT every week) and what their behaviour policies are regarding ASD pupils(plus many more!) Once I have all this info I will then compare to the school/s I want him to attend and then if the LEA come back to refuse my preference I can argue my case. So I would say his progress is a good reason for furthur support,you can argue that without the support he will no longer make the type of progress he is making now and is likely to fall behind. Hopefully his current school is willing to support you in your application.
  16. What I meant was how would you know the person was over 18? Like will there be a separate log in?
  17. Don't get me wrong I am not totally against it,and even if I were it would make no difference as the majority rules and I have to say at this present time the majority are adults with ASD that are active users of this forum. My sons' will one day be adults with autism and I know there are things the will not come to ask me about and be curoius to know what is part of their ASD as opposed to just the usual growing up dilema's, so defo agree there is a need for it. My only concern is how it would be monitored and again the only question(which has now been answered) was whether anyone has even attempted to create their own forum. I only asked as I would have thought a separate forum,with fewer rules, would be more beneficial and create more members, however I also note that its unfair for adult members to have to leave as a result of their topics being restricted.
  18. I still don't see the need for a sub forum, however one stupid question if all of you really wanted an adult ASD forum why not just create one? My 12 year old has set up his own website and his own buisness,why can't you?
  19. When I went for Sam's dx in 2009,it was a year after I left my husband, the paed had asked info about him and I explained just how controlling he was(he prevented me from seeing my family 2 years prior to me leaving.) When I mentioned everything she said that its possible he has ASD, however learning more about ASD has made me see that he does not have ASD he was/is just an a***hole. Both Sam and Dan are conrolling to a point but I have found that there are ways to work on compromise and as they have got older they are more flexible. I do think if allowed they would be far more controlling. Food is one major issue where they can control what they eat by just refusing not to eat at all, in Dan's case it got to the point where he was fainting almost daily and could not attend pre-school as he was just too weak. Now that his speech is better things have improved but its still an issue. Then of course there is the tantrums/meltdowns/constant screaming to get their own way,very hard not to give in but I don't. By teaching them now that they cannot control me I am hoping they will not control anyone else they meet later on in life.
  20. I have to say I very rarely see the word normal being used on any forum relating to special needs/ASD and ironically when I do its usually those with special needs/ASD who use the word as opposed to those caring for them. If I struggle to find a word and need to use it I put it in inverted commas, for the simple reason(as you ask) what is normal? My mum is quite eccentric and as such I don't think I have any clear idea of what "normal" is. I think it is a word that is open to interpretation what is one person's normal could be another's "abnormal"(?) or strange/weird. Even when I describe my two boys that do not have ASD dx I say they are neurotypical(NT) but again what is neurotypical? My eldest son is certainly not "typical" he does not have ASD but he is not like any other 12 year old that I know and has always been different to his peers. I suppose we are told/given these words to use and in a sense have no option to use them in certain context.
  21. I gave up along time ago comparing my children to others....even my NT boys. My eldest (NT)is way above average so I dont even look at where he is meant to be and now he is at secondary the attainment levels are 1-5 with 5 being the highest,in real terms the school would like to score him higher than 5 but there are no furthur boxes to tick so he is at level5 for everything. In the same way my two with ASD cannot be compared with NT peers. Sam is 9 and still does not read as much as they would like him to and when he does he sticks to the same books....repetition. My 4 year old(NT) is also slightly behind his peers like your son he doesnt get books to bring home,but he is happy to try read Mr Men books as I have been reading them to him at bedtime for a year. Age also has to play a role in learning outcomes....my eldest turned 5 just two months into reception but Sam turned 5 the summer after reception(11mths later!) and Eli (4) will be the same. It is therefore hard to compare children in reception. Another point for me was just to get Sam to be able to attend school for a day not so much how well he was doing.Now he is at the right school he has come along way however he is still behind....it does'nt bother me that much as he has plenty of time to achieve all he wants. I am almost thirty and only started furthur education two years ago so if I can do it(with five kids) so can he.
  22. There is no simple answer in my experience. Both my boys have a "spikey profile" they are above average in some areas and 2-3years behind in other areas. As they grow I have found they have improved in those areas where they are behind however it has been a very slow process. I appreciate any type of progress,after all three years ago Dan could not form a sentence and knew very few words(even those were not pronounced properly) now he can talk quite fluently albeit unclear to strangers. ASD is a development delay so of course as a child develops things will improve but there are some areas where they may never be at the same level as their peers however ot doesnt mean one should not strive for this.
  23. Very organised response...can you come and clean my house? I am in the same position Merry. There are 7 of us...two adults and five kids...living in a two bedroom house. Are things cramped? Extremely. However we know where everything is as we go through things once a month and throw away what is not needed,this is especially true with my 10 month old. Babies grow so fast so clothes take up space,we chose 1-2 outfits to keep and give the rest to charity. My four boys share one room,my eldest has a mid-sleeper which has a small wardrobe and desk so he can store most of his things neatly, 9yr old and 6 yr old have a bunk bed again saves space and my 4 yr old has a single bed which manages to fit behind the bedroom door,his bed has drawers for storage. In the room I share with my partner and baby we have two three door wardrobes(one for my partner,one for the boys),one two door wardrobe(for me and my daughter) and a four door chest of drawers next to baby's cot. We have many toys which are stored in upright toy boxes(4 sets of four) and under the bunk bed. In the living room we keep very basic furniture,longe suite and dining suite and telly...no other drawers or anything. It is much easier to clean when there is less furniture,I always wanted a cabinet to keep little "treasures" or old photo's as my older family members had this but practically I cannot see that happening not only the fact I have 5 very active kids but also the issue of dust,my eldest has bad allergies and asthma so need to damp dust every three days it would be a nightmare if I had too much clutter. To me there is a big difference between mess and clutter. My house is clean,relatively dust free and no food etc laying around. However there is always books lying around,my partner and I are students coupled with the boys' school books,it can be annoying picking them up all the time. Not to mention the toys. I cannot count how many times I have to pick toys up. As mentioned though, you need to teach your partner(and one day your child) to pick up after themeselves,when things are in the right place it makes cleaning quick and easy. When on placements I am too exhausted to clean so if nobody helps out the house will just get worse.
  24. I agree Matzoball. I have been on here for just over three years now. I to have seen many members come and go,and no offense to those leaving but such people did not announce it..or when they did they stated it would be a break but after a year of no posts you can safely assume they are not returning. I noticed recently two members posted they were leaving and then within days or even hours they had made a comeback...so what was the point of announcing?(just an opinion!) Personally I have found those group to have gone downhill for about 18months now,there are certain people who left all around the same time who really added something special to this group and I feel its not been the same since. I rarely post and in fact a few months ago one (relatively)new member thought I to was a new member as I had not been seen on here much. I really think majority of the people come here to hear what the want,and yes it can be the case on many forums but I find here its worse like what is the point of giving an alternative suggestion or opinion when its clear its going to be pushed aside by the majority of posters. Just because someone puts on many intellectual posts and opinions does not mean they know it all or that there answer is the right one to follow. Best way I can describe it right now is sheep,and I hate to think that but its how I feel. There was definatley an issue with regards to moderators,there was nothing wrong with how the group was monitored and while I accept that some moderators do not appear on many posts they are still there "policing" the forum. I will always come on here as it was the very first forum I joined when finding out about Sam's ASD, so I guess it means something to me. I also seem members who have given me great advice and have been going through similar experiences,as a mum its great to see that their child is doing as well as my son. We are making the journey together which has always been my fear...going it alone.
  25. Oops sorry about that been up since 4am been to work and now trying to get five kids to sleep,my reading skills are not up to scratch.
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